Oh story problems...if my infusion rate is up to 400 mL/hour and I have 73 mL remaining, do I have time for a commercial free episode of Modern Family?

New Take on the New Normal

During this round of infusions I realized something that seems a little odd.  I am good at this.  As I hear what I just said through the pink haze, I should probably be more specific.  I am good at being a cancer patient.  I suppose it is nice know I am good at something.  Still realizing that is kind of a mile marker of the new normal.

What does it take to be a good cancer patient?  I don't think I am good at everything involved, and am aware of struggling with shortcomings, especially in the areas of social support and connection.  What I mean by "good at being a cancer patient" is the more day to day stuff.  I know what to wear so that I am comfortable and warm but also can easily expose an arm for an IV.  I come in to the cancer center with my backpack, filled with laptop, Big Bang Theory and Modern Family dvds for humor therapy, (thank you Norman Cousins), I bring my own tea and spill less mug that the volunteer fills up with hot water for me.  I know just how to set up here, for me it is more ergonomic to use a bedside table with a sliding top than the lap board that fits the chairs.  So, I sit here, drinking my Naked Blue Machine, snacking on 71% organic dark chocolate and watching Sheldon and Lenard bump awkwardly through life.  I manage my IV stand with formula one handling skills as I weave through obstacles on my way to the bathroom, drifting it into position so that the lines don't tangle as I take care of business, speaking of....it is about that time...

Then the pump beeps so that the nurse can acknowledge it is time to shift into second gear.  With the early start and having the premeds on board (which saves my insurance company about $1000 and cost's me about $2.00) I should actually be out of here before lunch.  The lunch here is good for institutional food.  Friday's menus is better than Thursday, the manicotti is really good.  Still, I feel the beckoning of Trios salad from Brasserie 4.  But that my wait until later when I can finish the day with the chocolate mousse.

So I think I have this part down really well.  When I first realized I was a little proud of it.  It shows how I understand my own needs, am assertive in getting them met.  The satisfaction of achieving a bachelor's degree in self care.

The crux unfolds as the gravity of what being a good cancer patient begins to sink in.  I think the weaving analogy works quite well.  Cancer is a thread in my fabric, a visible thread of the pattern  for 24 years now; still an integral part of fabric from the beginning of my life, hiding behind the warp.  New threads tied in as I have experienced cancer from different vantages.  My first cognitive awareness as a cancer patient, seeing the cancer survivor mirrored in friends, loved ones with cancer at the end of their lives, seeing the sibling role from the other side, having my whole survivor paradigm tilted to a new axis with the death of my brother, facing a second diagnosis, good friends facing cancer in their parents, interning in a cancer center and working with hospice. At this point I could more easily change my retinal pattern than tease out the impact of cancer on my life.

In grief work, we have abandoned the idea of "closure," acknowledging that the impact doesn't not end because one comes to a cognitive realization.  Instead we talk about recognizing how the event has changed us, brought us to new vistas, helped us discover and know ourselves and others more fully, resigning the pain and the struggle and affirming growth and perspective.

Though the pain is never fully gone, the scars though fading, never disappear.  The "new normal" is much richer and fuller than the old normal ever could be despite the comfort of familiarity.  As hated as the phrase is when feeling need for the comfort of what is gone, it develops its own savor over time.  The richness and wholeness comes as the work of the journey is accepted and even at times embraced.  Though we would like to still have our loved ones with us, returning to the bland, soft, whiteness of before is hardly palatable compared to the complex savor of accepting wholeness.  We can no more go back than bleach and refine the flour baked into a loaf of bread.

The new normal is not something out there to search for, it isn't a treatment goal to be achieved.  It is already, and waiting for us to realize.  It is at the same time inside of us and all around us, part of us as we are part of it.  It is bigger than us, bigger than our understanding, beyond our control, yet our relation to it is subject to the influence our choices.  Accepting there is a new normal is a step in accepting what is, beyond us and outside the boundaries of ego.  

Full speed ahead through the pink haze!

Alive

First thing is that I have less and less belief in coincidence at times.  Just consider all of the songs out there in the world.  Even if you limit that to the songs that I like.  As I settled in this morning for my first dose of the second maintenance round of Rituximab, I opened Pandora for a little background music.  The very first song that came up, Pearl Jam, Alive.   It wasn't on a Pearl Jam station, and it wasn't a song that I had thumbs up, so the only part of choice I effected was that the last time I used Pandora, Oasis was what I was listening to.

"Alive"

Son, she said, have I got a little story for you
What you thought was your daddy was nothin' but a...
While you were sittin' home alone at age thirteen
Your real daddy was dyin', sorry you didn't see him, but I'm glad we talked...
Oh I, oh, I'm still alive
Hey, I, I, oh, I'm still alive
Hey I, oh, I'm still alive
Hey...oh...
Oh, she walks slowly, across a young man's room
She said I'm ready...for you
I can't remember anything to this very day
'Cept the look, the look...
Oh, you know where, now I can't see, I just stare...
I, I'm still alive
Hey I, but, I'm still alive
Hey I, boy, I'm still alive
Hey I, I, I, I'm still alive, yeah
Ooh yeah...yeah yeah yeah...oh...oh...
Is something wrong, she said
Well of course there is
You're still alive, she said
Oh, and do I deserve to be
Is that the question
And if so...if so...who answers...who answers...
I, oh, I'm still alive
Hey I, oh, I'm still alive
Hey I, but, I'm still alive
Yeah I, ooh, I'm still alive
Yeah yeah yeah yeah yeah yeah

Every day is a gift.  Every sunrise evidence of the graciousness of God.  Recently at a hospice conference we had a presenter who was an expert in psychosocial trauma care and professional self care commented that we don't deserve to be working in people lives because we have a degree or a license.  We have to earn that right with each person each day. 

Maintenance

Tomorrow I start another round of rituximab as a maintenance dose.  In some ways it seems a little weird, in the end it just makes sense.  It isn't because we know it is still there, it is because we know that we don't really know, and in b-cell lymphoma when it is used as a follow up round or several maintenance rounds, the number of complete remissions following the second round is really good.  Luckily the insurance approved it, a little later than scheduled, but without a fight.  So tomorrow and the following 3 Fridays I will be back in the chair in the infusion room.

Follow up

I had my one month follow up yesterday.  It is hard to believe it has been a month already, and I nearly forgot the address for this blog.

There are some parts of treatment that are more comfortable than after its over.  During treatment there is a schedule and a regularity, however shitty it may be.  But at least there is a fairly clear expectation and something to do.  I think one of the hardest parts of being a cancer survivor is that there is not necessarily anything do do about it.  I don't know if that makes any sense to you.  It isn't that there aren't things you can do, really there are so many things one could get obsessive about it.  Depending on who you believe, cancer may be caused by everything from the bug spray on produce to the electromagnetic radiation that is collected and pooled underneath you by your mattress and box spring.  Everything from a little charred meat to half the stuff in a bottle of lotion might be on someone's list.  Just trying to figure out what should actually be avoided and what should be supplemented is maddening.  But that isn't really what I am getting at.

The best word I can come up with for the feeling, and it is more of a metaphor than definition by any means, is abyss.  You know that scene in Indiana Jones and the Holy Grail where he comes to the end of the tunnel and there is that huge canyon.  Imagine that without being able to see the other side.  I suppose in clinical terms it is what we talk about as "finding your new normal".  Lance talks about several months after he finished treatment and started to feel well again, he just didn't know what to do with himself.  I wonder if his drive may have just been to find or rather make meaning.  Not of the cancer specifically, though he does allude to that conclusion as well, but to make meaning of life.  I am not sure if it is to deny the abyss or just to that a meaningful life somehow becomes more necessary.  The other thing is that he and some many other cancer survivors had a life or something to get back to, and that becomes a vehicle to meet the rest of the world.

I have been a bit more withdrawn I guess recently.  I don't think it is all about the cancer, because other things are weighing on my mind and taking up my time as well.  It is not like I have been anti-social, I have just stayed busy with housemates new work friends, and stayed here.  In someways I have always been living parts of the life that I thought made sense to everyone else, because I don't really know how to live a life that makes sense to me.  It is as though I am so weighed down by all of the things I think I should have or need, kind of like David going out to battle Goliath in Saul's armor, that I know if step into the abyss I will drop like a stone.  If I could really let it all go I would soar on wings I never knew I had.

My life, my understanding is so not material; enigmatic, esoteric, abstract. In my application to grad school, I described it as the difference between building a wall with bricks and building with random stones.  It seems like all the directions are for brick walls, "just do it like this".  There are different patterns you can lay bricks in, there are some artistic things you can do, but still the brick is a know quantity.  I don't seem to have any of those bricks in my life, I have a bunch of stones, and I feel like I am have been trying to end up with a brick wall.  I know how to build with stones, but what I haven't figured out is how to make my stone wall fit into a brick world.

4th one down

Good news today.  The results of the pathology of the needle biopsy came back negative for malignancy.  That is quite a relief.

Then I had my last infusion for this set of treatments.  First I had a meeting with Dr. C that went really well.  I had taken the time to organize the information that I had from several studies using rituximab, and write out a bunch of questions, rule outs, and thoughts about how I might want my treatment to continue.  As I asked questions and he looked at my notes, we really came to the same conclusion.  Because rituximab doesn't tend to show reduction in it's efficacy with multiple treatments, we can use it in a maintenance program.  So we made another appointment for a month from now to see how things are going, and we will monitor for symptoms  closely.  In six months we will do another 4X treatment of rituximab as a maintenance dose.
There is always targeted radiation, and toxic chemo regemins if things get worse not better, and there are newer monoclonal antibody drugs coming out as well. So physically, this one is looking pretty easy.

Cancer is just one more challenge of life

...and a big one.  Some how I didn't get in the right line when the LIFE manuals were being handed out.  It seems to me a lot of people have things more figured out than I do.  Oh well, one day at a time, right?

So my treatment yesterday went great.  I had the company of one of my housemates and my cousin for a couple of hours.  Ran the rituximab in at full speed with no problems.  No side effects afterward other than the groggy from the benedryl.

So now that I am getting near the end of treatment, I have to start getting back to the rest of life, adjusting to whatever my new normal is going to be as a 2x cancer survivor.  The jumble of things I left behind makes it hard to decide what to prioritize.  I had a job interview for a part time position that will be really good experience, but not many hours, and another opportunity, so I guess I will have to paste things together and make it work.

I think I am to the point of just rambling now.  So I should probably just end this post.

I do want to say a big thank you to all of you who have called and checked in and been generally supportive through all of this.  It means a lot to me.